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is there something else going on????help please

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11 years 6 months ago #44769 by CHELS04
ok real quick run down of what is going on

sept 2014 went to gp for bruising and tired all time he did cbc everything came back fine but my platelets which were at 45 sets me up with a hemo.

oct go to first hemo apt count 74 he treats anything below 100 with symptoms. I am 32yrs no other health issues does more labs see him in a week to see how I respond to prednisone 60mg a day for a week platelets went to 169 he says itp is what I have every other blood test was normal. so he says I can taper to 40mg a day see him in three weeks unless I have any symptoms then call the office. Last night I had 2 bruises show up out of no where. CAll the office this am order cbc platelets are 134 after 2 weeks of 40 mg pred. Why am I starting to see symptoms I go back to doctor next Thursday and will have a cbc again.

Please help I don't understand y when I was on the 60mg I seen nothing and y are my numbers still on the lower end with pred. I wonder if I'm gonna crash when I go off pred. I do not wanna go back up a dose when I was on 60mg it was awful I don't wanna be on them if they aren't working! An I know u aren't suppose to be on them for long term. I feel like I have gotten no where!!!!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago #44773 by Sandi
Chels:

You're getting way ahead of yourself. Slow down, girl. Your counts are fine and having a few bruises has nothing to do with a possible crash happening in the future. Bruises can indicate low counts, but that isn't always the case. Normal people bruise too. 134 is considered to be a normal count.

Describe the bruises. How big are they and what color are they?

My counts are in the 200's and I bruise all the time. I got one last week after blood work. I get them from my dogs stepping on me. (They weigh 50 to 60 pounds).

You do not have to go back on Prednisone if you don't want to. You didn't even have to take it this time. Your Hemo does not seem very experienced with ITP so if this continues and your counts drop, you should get a second opinion. No one can make you do anything and treatment is only necessary when bleeding becomes a real risk.

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11 years 6 months ago #44774 by Aoi
Sorry to hear you're having in a difficult situation. A low platelet count is one cause of bruising. There are however many others, including low thyroid function (hypothyroidism), low vitamin K levels, low B12 or folate, and a long list of uncommon disorders.

I bruise regularly at a platelet count in the 80 to 100 range. My hematologist thinks this is i part because I'm quite lean and pale, meaning even little bruises are visible. But I've had lots of testing done to rule out other problems, and I've never been low enough to justify meds (my hematologist does not seem to treat low platelets until counts go below 50).

ITP is a diagnosis of exclusion, and it's possible something else is going on. What does your primary care physician say as regards your general health? What testing have you had done besides a CBC? Are you bleeding in any way besides bruising?

As many people here will tell you, doctors have different thresholds for when to treat. You can always discuss with your hematologist the risks/benefits of treating at different levels, and if you feel the need, you can switch hematologists.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago #44775 by Sandi
P.S. Prednisone IS working. It got your counts up. It did what it is supposed to do. If you hadn't had any response at all, then it wouldn't be working.

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11 years 6 months ago #44777 by CHELS04
Thanks guys I have never bruised easy at all when I started noticing the bruising months back was y I went to doc because they don't hurt they are big and usually start out blue then turn black and yellow and take weeks to go away. once my bruises cleared and I was on the pred and my count was going up I never got another bruise til yesterday and my gums used to bleed but aren't now and I did have blood in my stool this week and they want me to see another doc about a colonoscopy

they have checked my iron, my thyroid, b12, anemia and I'm not sure what all else I don't have my paper in front of me, lol. I just know that I am not an easy bruiser and since I have been on pred I have had non. I thought tht with the pred my count should've went higher than 169 and 2 weeks on 40mg and it has dropped to 134. I am healthy I have no other issues that I am aware of that is why I'm wondering if this is really itp

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11 years 6 months ago #44781 by CHELS04
Sandi,

So with the pred its in hopes that it will go up and stay up???? is there always a drop with taper???

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago - 11 years 6 months ago #44785 by Sandi
Yes, ideally, the hope is that counts will stay up after Prednisone. Realistically, the hope is that it will maintain a rise in counts for a period of time. Counts do not always drop, but the majority of the time they do. I have seen people here treat with Prednisone once and never have a problem again. It happens.

After I was diagnosed, Prednisone kept my counts up for a few months. I started out at 8k and ended up at about 350k. I had about two months off of it and my doctor put me back on it when counts hit 60k. I was new and did what he said, but knowing what I know now, I would never use Prednisone (or any other treatment) at that count. Anyway, I started at 40 mg's (refused 60 mg's) and stayed on it for a few months. Counts stayed up for a year and a half, then I stopped getting CBC's. A year and a half later my GP talked me into getting a count done. I did and my count was 35k. I just monitored for a while and when I got low, treated again off and on for a few years.

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11 years 6 months ago #44787 by CHELS04
So is still a good chance it is itp? I just don't understand y I would be seeing the bruising this is same bruising I was seeing when my counts were 45 I just wondered y I would be seeing them. an I thought that being on preds my counts would be higher than 134 when 2 weeks ago on the pred they went to 169. Sorry this is all so confusing to me. An seeing blood in my stool they set me up with a consult for a doc to discuss a colonoscopy. Just wondered if it tied together or was 2 separate things. its a lot to take in when all my labs are coming back fine but my platelets.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago #44792 by Sandi
When all labs come back fine except for platelets, it is assumed to be ITP. Chances are, the blood in your stool is some other problem and hopefully, the colonoscopy will figure that out. There can be a few causes for that.

Dropping Prednisone that quickly and so much can cause a drop in counts like that. As I said, dropping too fast could even cause your counts to end up lower than they started. I hope that isn't the case.

I can't explain the bruise, but if you don't have petechiae, nose bleeds, heavy periods or bleeding gums, I wouldn't worry about it much.

If you have some sort of problem with platelet function or something like that, your doctor should get to the bottom of it. Symptoms at that count are unusual.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago #44793 by Sandi
Here is some info on von Willebrand's. It's a bleeding disorder that can cause symptoms with normal platelets. I'm not saying you have it, but there can be other causes for bruising.

www.nhlbi.nih.gov/health/health-topics/topics/vwd/signs.html

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11 years 6 months ago #44794 by Jen35
CHELS04, I am sorry you are going through this. The first thing that I was scared of when I was diagnosed with ITP was that my low platelet count could be because of something worse than ITP. As long as everything else on your CBC is normal and there are no abnormal cells on your blood smear my hematologist told me not to worry. I know several people who are on prednisone for issues other than ITP and they get bruises from the prednisone. Steroids can make your skin thin out and bruise. Some people's skin is just more sensitive to steroid use.

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11 years 6 months ago #44796 by CHELS04
Thanks guys!!! yes so far everything they have done has been normal but my platelets. I do not believe I have had a blood smear tho. I will be asking next week when I go to the doctor if he had done one.

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